Adventures in Topamax: I'm on a Weight Loss Drug, But Not Because I Want to Lose Weight

All of my doctors assure me that the weight loss will slow down eventually, and then I can begin to settle into my new body. I have an irrational fear that they are wrong -- that this weight loss will never, ever end, that I will shrink away into nothingness and disappear.

Aug 2, 2012 at 10:00am | Leave a comment

I’ve been taking Topamax, aka topiramate, for a year now. When I began taking this medication, I weighed a little over 60 pounds more than I do today.

I was put on Topamax to treat chronic migraines. I’m about to say a lot of things about this medication, but before I get started, hey, it really, did the trick for my crippling, month-long migraines. (Not hyperbole, just multiple sclerosis. Wheeee!)

When I started writing out to write this article, I wasn’t sure I’d name the drug that had caused my weight loss, but the FDA’s recent decision to allow Topamax to be used as an ingredient in a new weight loss drug changed my mind. In case you’re wondering, my opinion on this decision isn’t positive. My exact opinion on this probably isn’t even actually printable*, even on xoJane, because it’s so riddled with profanity. This drug isn’t to be taken lightly, and I wouldn’t ever, ever recommend it for weight loss. 

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This medication can cause your birth control to be less effective. Also, it can cause birth defects. But hey, let’s hand it out to more folks for weight loss, because: MONEY!!!

Topamax comes with an innocuous enough sounding warning about “possible weight loss,” and approximately only about 15 percent of adults who take this medication experience a significant weight loss. This drug has a better (16 percent) chance of making all carbonated drinks go flat, actually. Grape soda on Topamax? Surprisingly good. Dr. Pepper on Topamax? Weirdly like licking an ashtray. What’s that all about?

I’m one of the weird ones: My body is pretty susceptible to weight-related side effects in either direction. I’m lucky that years of various anti-epileptic medications helped me gain weight before I started Topamax. (Hey, thanks, Depakote!)

The first 36 pounds came off fast. I couldn’t eat much solid food, so I focused on Ensure, juicing, soups and vitamins. I worked with my doctors and a nutritionist, but the general consensus was that it’d pass and that while this wasn’t ideal, I’d be OK.  Health professionals of both genders seemed unconcerned. The experience was treated as a very no-nonsense sort of affair, all a “This is all to be expected. Ladies love losing weight, don’t they? Looking forward to that little black dress yet?” sort of thing. I found the entire thing very frightening. I don’t enjoy my body being out of control.

After about three months, my body got accustomed to the drug. Even once I could eat, the weight kept coming off -- just more slowly. It was scary; this was just yet another area of my health in which I had no control. 

Before I’d become ill, I had owned my body -- I’d felt as though I inhabited it. The pain I was in  and the mystery surrounding what was happening had really separated me from my ability to connect with my physical self. As I’d entered treatment for MS, I’d been reclaiming my body again in a serious way.

I’d slowly taken back my health, and I’d been feeling better than I’d felt in years -- hiking, training to become a yoga instructor, running, taking on the 100 Push- Ups challenge again. I was heavier than I’d ever been in my life. I was also living in a body that felt alive again for the first time in almost a decade because it hurt less, it had more energy, and because I had finally found an answer as to what was happening. That was amazing; it was like coming home.

When the weight began falling off my body, though, I began to feel like an awkward pre-teen all over again. My body was a totally different place, and I didn’t know what to make of it or how to move in it anymore. I was newly clumsy, and weirdly ashamed of this new body that everyone seemed to have an opinion about.

Yoga became more risky; I would go to pull myself into a shoulder stand and risk hurting myself -- I no longer knew how much weight I was lifting. My body felt wrong and surreal. Being chronically ill, a former athlete and a yoga teacher, I noticed these things, and it made me feel like a stranger in a strange place.

Eventually, I started having breakthrough headaches, so my neurologist raised my dose, and so here I am, losing weight again. My weight loss is at a little over 60 pounds, but I’m just beginning to see what I think is the end of the ugly period. Solid food is becoming possible, and while I’m still losing weight every week, I’m also beginning to get enthusiastic about food again. Sure, I’m mostly just watching episodes of "Master Chef" (Christine Ha forever!!!) but I’m thinking about food!

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This is the two-sided insert that comes with each refill. It’s really super-intimidating to read.

While I deal with all the oddness of my ever-changing body, I also deal with the world’s reaction to it. Everyone has an opinion on my sudden changes in appearance. They tell me I look great. I don’t look great, or at least, when I look in the mirror, I don’t see it. What I see is slight malnutrition and exhaustion. I see my complete lack of an ass. Where is my ass? It’s completely gone. I miss it. (Come back, ass. I miss you when I sit.) 

When I look in the mirror, I see the strangeness I feel. People always interpret this change as proof that I’m in remarkably better health -- my change in weight is always seen as proof that my MS is doing better, which is just mind-boggling to me. My weight has nothing to do with my multiple sclerosis. I was stronger when I was 60+ pounds heavier. They always ask me for my secret. How did you do it? they ask me. 

I try to cover my body as much as I can to try and deflect attention, but here it is, summer, and how much can I cover up? Hoodies and cargo pants aren’t really an option in mid-July in Baltimore. OK -- not a wise option. 

It makes me wonder what they thought of me when I was 60-plus pounds heavier, when I felt at home in my own skin, when I felt beautiful, powerful and strong. Were my friends, acquaintances, co-workers and family just seeing me as chubby and -- as they seem to be expressing --  somehow less?

Were they incapable of seeing how amazing I felt, how happy I was to be feeling better, to be freer of pain? How could they not see and share in the amazing joy and health I was experiencing? Instead, they just see the weight, and its loss.

It makes me feel angry and small and hard, brittle, breakable. It makes me feel compressed. It makes me feel alone, and utterly reduced.

I’m learning that I’m not alone. There are plenty of people who can’t gain weight or have lost weight for medical reasons. We’d prefer to have bodies that obey, to have bodies that are literally unremarkable. Our bodies are out of control, and that’s the part that hurts -- we have illnesses and/or disabilities that we don’t want to explain to people. 

Every time someone asks me what my “secret” is, I answer honestly. “I had a meds switch,” I tell them. “It isn’t intentional, and I’m not really a fan, but it works like gangbusters for those migraines I used to have, so that’s fantastic.” 

And every time, without fail, the response is something along these lines: “I’d kill to have a problem like that. You look so good.” Some folks try to force food on me, or they comment on what a “wonderful problem” I have.**

I know most people are really trying to be kind. Most folks are hoodwinked into equating “slender” with “healthy” and “attractive”, and it can be true -- there are women of all shapes and sizes who are beautiful and strong! -- but in my particular case, I just don’t feel beautiful right now. I feel strange, foreign and out of my body. While these people don’t mean any harm, they are hurting me every time they open their mouths. 

I’m getting better at managing my anger when this happens, but I’m having a hard time remembering that overall, people are trying to be complimentary and kind. What does a compliment matter when someone has essentially disregarded your overall health, inspected your body, and insulted your previous appearance, though? Why can’t people talk about something other than how I look?

All of my doctors assure me that the weight loss will slow down eventually, probably in another 15-20 pounds at most, and then I can begin to settle into my new body. I have an irrational fear that they are wrong -- that this weight loss will never, ever end, that I will shrink away into nothingness and disappear. I want to take up more space, to be strong, to feel powerful and solid again. 

I’m trying to focus on the positives: I don’t have migraines anymore, which is AMAZING, and this smaller body means I can knit a sweater for myself more quickly, and that’s cool. Other than that, as long as I’m not in pain, I’m going to spend my time focusing on loving this body, whatever size it is. 

* Regarding the use of Topamax/topiramate as an ingredient in a weight loss drug, I feel this is irresponsible drug mongering of the worst kind. I think, like most other weight loss pills, this will make some people very sick, and will most likely fail on multiple levels, seeing as it only has an 11-26 percent success rate and it has a metric ton of potential side effects, most of which are very serious. This is an antiepileptic, and shouldn’t be handed out for weight loss. There’s also evidence that, much as is seen with standard  weight loss medications, once a person is taken off Topamax they return to their natural weight. Not only is there the risk of side effects and birth defects, but there is also the risk of the drug not working at all.  

** Worst response ever: being asked how to “acquire” Topamax by an acquaintance. I’m pretty sure this was an attempt to buy my meds.